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It's a public thread, anyone is welcome to share the link.

We've been asking for longitudinal studies like this for a long time. I don't see why someone can't do one with proper funding.

Do we have evidence of puffy faces? I'm not aware of any. Nor have I noticed it in myself ir my daughter, though for myself I'm not in a fit state to look in the mirror in PEM.

You are not alone. I'm the same. My PEM that fits the definition of PEM including delay, worsening of all symptoms and new ones, as spelled out in my post, is, as far as I can see, entirely triggered by exceeding my physical threshold. I have tended to hold back from saying this when people are...

I have different responses to the different stimuli.

Thanks, @EndME, yes, I left out cognitive which needs to be included. I'll add it to the title and first post.

I have started a new thread here Is PEM triggered by physical exertion the same as worsening triggered by sensory stimuli, cognitive exertion or emotions? What are the implications? Edit: New thread title amended.

I have started this thread in order to reduce diversion of another thread where the subject arose. Here are a couple of quotes from that thread: My questions for discussion: pwME experiences: Is the worsening of symptoms triggered by sensory stimuli such as light and sound the same from a...

Why does the fact that for some pwME sensory sensitivities set off worsening of symptoms mean that exertion triggered PEM and studies such as 2 day CPET are nonsense? There may be more than one biological mechanism leading to worsening from different stimuli. I don't want to divert this thread...

I think the Dr Jake Hollis one is worse in a way, as he repeats as fact the unevidenced stuff about stress, adverse childhood experiences, perfectionism etc.

Moderator note Mods have been asked for advice on what is allowed by our rules in this discussion. This is the relevant rule: This means that if personal medical information is on social media, including petitions, it should only be linked, not copied. If the information is in a newspaper...

The writer of the article completely misses the point that there is no evidence to support brain rewiring as a treatment for ME/CFS, and she doesn't mention harm suffered by many from the likes of LP which is based on the same ideas. It is pseudoscience, and should be called out as that. I...

Is it possible for a patient who is very sick to be sedated for a long ambulance trip?

There is no detail given on the 'specialist centre'. I hope it's not CBT/GET.

I'd be wary of a UK ME/CFS public enquiry while the likes of Wessely, Sharpe, White, Chalder, Moss-Morris et al are still influential. The desire for 'balance' can scupper deep understanding of the problem, and eminence over-ride evidence.

If you pick a few at random from the subforum labelled: Psychosomatic research - ME/CFS and Long Covid You'll come across plenty that claim an association and at least imply cause.

I also like the invisible electric fence image. My one I invented before I even knew about PEM was that my life was like walking a tightrope where a single misstep or puff of wind could topple me off, and I never knew how far I'd fall and how long it would take to climb back on again.

I've glanced through the transcript. There seems to be a lot of telling each other what wonderful doctors they are and how exciting it is to be working together. Lots of stuff about MCAS and connective tissue and CCI/AAI/tethered cord which I think Dr Ruhoy is involved with. I don't think I'm...

Can someone alert them to Wesselyite psychiatrist Dr Ben Shepherd who is a tory shadow health minister. If they are doing parliamentary advocacy, his intentions need to be clarified. He has expressed an interest in ME/CFS, and ì fear will try to wield influence against the NICE guideline.

I don't think we have seen any evidence of preexisting psychiatric illness being a risk factor for developing ME/CFS. The studies of people developing ME/CFS following EBV by Leonard Jason found none. The only ones I recall that claim cause are wrongly imputing a causative direction from an...